I was diagnosed with BL (stage 4) in October 2016 (58 years old). PET on January 13, 2017 proved in remission.
My symptoms started in the beginning of August 2016 with lower jaw pain then to a numb lower lip. Jaw pain increased to excruciating pain. Doctors thought I had trigeminal neuralgia. I suffered through these episodes. Then I developed middle back pain shooting down my left arm causing numbness and limited movement of my fingers. Doctors thought I had a pinched nerve. I explained to him that I was waking in a pool of sweat, I felt like a had the flu. Doctors said a pinched nerve would do that. Finally after suffering for over 2 months I loss movement of all fingers on my left hand. Back to doctors, he then called for an emergency MRI. I received a phone call from my doctor, he told me the MRI showed cancer on my spine. He advised me to go into Boston to the emergency room at Brigham and Womens Hospital. With my symptoms they put me on a neurology floor and ran tests and scans. The tests came back initially as a fast moving non Hodgkin’s lymphoma, but would take about 7 days to figure which one it was. I was assigned a Dana Farber Cancer Center doctor and after a round of RCHOP chemo I was sent home (7 days hospitalized). I met with my oncologist 7 days later and he informed me the biopsy showed Burkitts lymphoma. He told me he believes he can cure it but to do that he would have to “beat me down “. He said that I would feel like a had the worse flu of my life, times 10. Basically to cure it he would have to destroy me. My Chemo regiment changed to “modified Magrath Method ” CODOX-M with intrathecal’s (part A) and R-IVAC with intrathecal’s (part B). All treatments I had to be hospitalized, part A, 4 days inpatient then home for 3-5 days and part B, 6 days inpatient then home to recover to start the process over again. I developed a fever and had to be hospitalized again for 7 days. All together approximately 30 days inpatient. During the treatments to help my mind and body I walked 1-2 miles each day, if in hospital I’d walk around the elevators on the floor or at home walk a grid pattern in my back yard. No matter how bad I felt, I walked. Treatments at first were handled OK (RCHOP) I developed stomach issues probably caused by the prednisone. First round of A and B, I developed serious hemorrhoid issues which lead to infections. As the treatments progressed it became tougher to deal with it (more tired, flu like). I needed transfusions of platelets and blood since my levels were so low. Doctor was right he did beat me up but he put the cancer in remission. Doctor told me it could come back but if it does it’s usually in the first 3-6 months, after 1 year in remission it probably won’t come back at all.
We will continue to hold our breath for that first year and hope for the best. Hope this can help someone.